Spring break(?)
Recap
Cancer war
Generally, we are in a holding pattern. Radiation therapy wrapped up a week-and-a-half ago and seems to have gone well. No further immune therapy treatments have happened as we are waiting for Sam’s immune system to return to normal/safe levels. The initial treatment ramped-up Sam’s immune system, ideally to fight the cancer, but a side effect has been that the immune system is running on the edge of out-of-control causing graft versus host disease and agitating his liver. So we wait. At clinic yesterday, we changed meds to slow the immune system down/ bring it under control.
During this waiting period he have seen Sam generally been lethargic with some itchiness related to graft versus host disease. It is unclear what causes the lethargy in Sam, it could be effects of the radiation or immune therapy, it could be the disease, all of the above or something else … We do get glimpses of the real Sam full of energy and life. These times are encouraging though it is hard to watch him drop back to lethargy.
Generally, we are in a very ambiguous situation – not knowing what is happening with the cancer or if the treatments are having the desired effects. Sam will have a PET scan tomorrow (Friday, April 5) which should give us a picture of where things are at.
Living life and special memories
The previous two weeks have been busy. In adddition to medical appointments we had good visits with friends, family, and we attended a couple hockey games.
Friends and family
We have been encouraged by visits with friends. Most importantly – Sam’s friends. It was spring break for the schools and a few friends were able to visit during this time.
Chase came and stayed with us/Sam for a number of days. Ben, along with the rest of his family, was able to visit a couple different times. I am thankful that these boys were able see Sam when he was up and when he was down and simply accept him where he was at.
We also love the times we can connect with family, here at the RMH, at their homes, and at a hockey game.
Hockey
Sam has really been enjoying hockey during this difficult period. He looks forward to watching games. Since I last wrote we were able to attend two.
First, we attended the WHL’s Vancouver Giants versus Kelowna Rockets. This was a special family time as we were gifted box seats to the game. Family including Cal, Tricia, Jane, and Nana Mary were able to meet the three of us plus Chase there.
This past Friday (Feb. 29), The three of us were able to attend the Vancouver Canucks versus Dallas Stars game. We had a great time together! Sam enjoyed it so much and this will be a core memory for each of us. Although Vancouver lost it was a great hard-fought game and with a party atmosphere at the arena!
Upcoming
We will be at clinic 2-3 times this week. Sam will have a PET scan tomorrow (Friday, April 5).
Victories and concerns
Sam’s energy and capacity for simple living have swung up and down over the last month. The majority of the time his energy is low but we do get glimpses of our real Sam full of energy and life.
The ambiguity of not knowing if treatments are working and delays in treatment are challenging – to the point of terrifying. We have managed the not-knowing well, but our reserves/defenses are drained/weakened.
Thankful that Sam’s pain levels have been stable and generally easy to manage. The main challenges are related to the GVHD, specifically with rashes, which are not painful but are at times very itchy and hot.
The new immunotherapy drugs seems to have released Sam’s immune system to hit harder. Though we look forward to this pushing the cancer back, side effects of the new immune system attacking healthy tissues are also big concern (i.e. GVHD). Sam has had some adverse effects and we need to allow these to resolve before proceeding with new treatments.
We are thankful to the medical team here at BC Childrens’ Hospital who have explained things incredibly well and who have worked professionally and confidently. Your clear communication, compassion, and medical care give us great confidence.
We are thankful for the gift of a place to stay so close to where Sam is receiving his care. The Ronald McDonald House (RMH) has provided us a home away from home. This place is an amazing example of charity at work.
Thankful for friends who have chosen to meet regularly to pray for Sam. If you would like to join them talk with Beth H., Krista C., or contact the Westwood Church office.
The cancer remains and has spread to new areas in Sam’s body. The sites are a mass in the center of his chest (the original), and newer sites in his back (T3 vertebrae), his hip (right ilium), and left shin (tibia just below the knee).
We long for the day when Sam is clear of this disease.